OK- so I will speak about the big "D" word - Depression. I personally like to call it the other "D" word- Denial. Yes- we have all experienced being down, blue or even full blown depression. But things are different for me this time- I can't seem to shake the blues at times, and sometimes it just sneaks up on me without me knowing it. The hardest thing for me to even admit is that I constantly fight depression - and it's affects that it now plays in my new life after the injury. This will be a hard blog for me to write.
Having a brain injury, like most illnesses, changes your life in so many ways. Some changes are temporary some are permanent. Sometimes it's the not knowing what is going to be permanent is a struggle within itself. There's an old saying in the brain injury world- "if you've seen one brain injury, then you've seen one brain injury." Everyone is different and so are the injuries to brains. Depending on if you are a left or right brain person and the location of the injury, is how the injury itself will affect the different aspects of your life. Well, I have 4 areas affected- the left and right frontal and temporal lobes. So- I am certainly affected in multiple areas. Each area of the brain is used for different "controls and functions" of the body. The frontal lobe's purpose is for the executive function meaning the planning, decision making and sequencing of events. The frontal lobes also control the attention and emotions of a person, just to name a few. The temporal lobes are responsible for memory, understanding, language, speech, naming and musical ability. Of course there are other areas of the brain used for motor skills, vision, coordination and balance, appetite and evening breathing. In this blog, I want to focus on how my injury of the frontal lobe has affected some of my emotions.
Prior to my injury, I was an outgoing individual with a spit fire attitude. I undertook all the financial responsibilities and most of the decision making in the household- I was the accountant- it made sense. :-) But other traits about me were very caring, giving and loving to most people that came into my life. My sister stated once that I have a huge circle of friends and people that I trusted, and a tiny circle of people that I disliked. I have always been that way- very trusting and loved people. She was right. I was also very focused on goals, worked extremely hard and was very driven to accomplish those tasks and goals that I would set for myself. After my injury, my husband answered a question (per doctor's tests) about me pertaining to was I happy with my life before and/or after the injury. He answered no to both. I thought this was interesting coming from him- so I asked him why did he answer the question that way. He stated that prior to the injury- I was always trying to better myself- more education, higher role with my jobs etc. I was never happy for just settling where I was. After the injury I became very unhappy about what I can not do or remember- I was very unhappy with the brain injury and the effects it has on me. Now the after the injury made sense- but the first one was an eyeopener for me, and he was correct.
Some of my emotions are still in a numb phase- this was very distinctive in the beginning of the injury. Perhaps my body/brain could not handle or waste energy with emotions so for the most part they were numb. This truly sucks when trying to make decisions. I remember coming out of a grocery store and seeing my car in the front. I had a hard time deciding "what door to exit." I just stood there.... I thought to myself - Barb just go, but I froze- I could not make a decision. This is a very common aspect of my life now and it really SUCKS. Now over the past two years, some of the emotions are slowly starting to come back, but not nearly at the level that things were before. I remember going to a funeral and not crying- when I indeed loved this person very much. This in itself saddened me- how I felt so detached from my own feelings - how I should be acting but wasn't. I do have anger outbursts at times, but thank goodness these come and go very quickly- mostly when I am driving. Yes, more road rage....LOL I like to think of it as God put this numbing device in place because he knew that I would totally lose it if I was as emotional as I had been prior to the injury. Having these feelings that were now numb has definitely been a coping mechanism for me. Having these feelings "numb" is also a very scary place to be in at time as well.
Last night I went to the Brain Injury Support Group meeting. Actually these events is the reason why I wrote this blog today. I had a dear friend call me just as I was leaving for the meeting. Craig and I talked about the times when we first started the IRS together- we were both assigned to the Fairfax office. I had adopted him as my little brother. He even stated in the beginning of the call that he doesn't want me to forget him (I have been diagnosed with dementia - but it's not like old age dementia- another time, another blog). I really enjoyed talking with him and laughing. We even talked about what I was going through and some of the obstacles that I still have to face. When I got to the meeting I just sat in my car after getting off of the phone. I didn't want to go in. I didn't want to have to face the reality that I have a brain injury. When I was talking to Craig- I was remembering the old me and my career- here this building that sits in front of me making me face the present of my brain injury. I made myself go in- for tonight was the big Pizza night with the topic of depression. I guess this time of the year depression can certainly be a big problem for most people, but it is a bigger problem with people who have a disability such as a brain injury. I wasn't in that room for a minute and had to walk back out to my car- I fled.
This emotion just took over with such power. I wanted to just run- far away from this building and the people in it. But after thinking about it today- it wasn't running from them- its running from me. After sitting in my car and making sure I didn't drive away- I made myself go back into the meeting and the "women" broke off into our own group after an hour or so. I did not want to talk. Hell, I didn't want to be there. The facilitator stated that she wanted us to talk to see where we all were this week. She picked me first- Of course I played tough- Ms. Cover up as my group now calls me. I stated that I was battling fatigue again etc. Talk just a few minutes about my meeting last week and turned the attention to some one else. I wasn't dare going to say that I too am depressed.
There was a lady there who talked about her depression and her thoughts of suicide. How she even counts her pills to make sure she always has enough on hand when she finally plans on doing this. WOW my heart just sank. I just wanted to jump up and give her a big hug- you are not alone I stated out loud, you are not alone. I couldn't believe that I was saying this out loud- but I did. Sadness- all I felt was sadness. Now, I do not count my pills- but I so "get" her feelings. I remember sitting there not really hearing what the other ladies were saying and I was thinking that I don't like this feeling. It's not me- how can I beat the injury if I am going to be sad? But here again- this is very common for people with brain injuries. Most of the other ladies talked about their sadness that they were feeling. Most brain injured individuals can't handle the loud festivities that we once could- the lights etc. Then there's the stress of the holiday itself. Funny how this one holiday - Christmas was never suppose to be about stress- but in reality it is a very stressful and depressing time of the year.
I guess this too is another reason why I blog. To get it out there. We are not alone. I guess you have to own a feeling before you can overcome it. Well, I want to be the happy go lucky person- to enjoy life as it should be. So for now- I will admit- I have depression. Some days I am good, others not so good. There!!!! my friends, family and doctors would be so proud...LOL and for those who are wondering- yes I am on meds for this. I guess for now I will just say its a brain thing-- and in time this too shall get better or at least I will be able to express it and understand it more.
If you or a loved one is feeling depressed- please talk to someone and seek professional medical treatment. You are not alone. We are all loved and cared about by the people that we have in our lives. Each one of us, touches the lives of so many people. I know first hand that it's hard to understand these points sometimes- but we are all very special people. HUGS to all....
Tuesday, December 13, 2011
Never Give Up....
This sums up why we fight daily. Not just individuals with brain injuries, but everyone.
Thursday, December 8, 2011
Vision Issues
I sat in my office and thought about what I would write for today, since I had missed yesterday's writing. So, I reviewed my MD's notes and decided to just pick one of many "impressions" as he calls them. My friend Landa and I met my brain injury specialist for the first time in January of 2011. We were there for over 5 hours. I was seen by two doctors and they did a "battery" of tests. This was the first time that I had heard the diagnosis of post trauma vision syndrome (PTVS). Most people hear of post traumatic stress disorder (PTSD), but this was a new diagnosis, like many, that I would have to do research. If they would only talk accounting terms like assets and liabilities I could understand- but I would have to continue my research in the "medical world".
PTVS - is when a person will frequently report visual problems such as seeing objects appearing to move that are known to be stationary, seeing words in print run together, experiencing intermittent blurring, attempting to walk on a floor that appears tilted and having significant difficulties with balance and spatial orientation when in crowded moving environments. Besides fatigue, which can be brought on by PTVS, this syndrome has been a difficult one to overcome.
When I was first injured, I started having on and off symptoms of vertigo, which became more frequent as the days followed. Within three days of exposure, I was experiencing car and motion sickness- something that I have never had before. Within a week, I had a hard time driving, watching TV, looking at a computer screen or going into stores. I constantly had vertigo and felt as though I was always going down a dip in a big roller coaster. At times, some if not all of these things will still bother me during the day, although I am so thankful that it doesn't persist all day. I used to be a die hard fan of the TV series 24 - The series would start every January- in January of 2010, I could no longer watch TV. I had to miss other shows such as Fringe and American Idol due to flashing lights, the flicker of the TV screen itself and way too much movement. I had discovered in a doctor's office that trying to read a newspaper would put me into instant feeling of falling and nauseous.
I remember not too long after my injury I went to have an eye exam, thinking that maybe it was my actual eyesight. My prescription had change "quite a bit". I remember the person ordering the eye glasses asked me had I been in an accident or anything. I stated no but was exposed to some form of toxins. We talked and she stated that some people who acquire brain injuries will have their vision altered, and in some ways altered a great deal. My vision was altered quite a bit- I certainly went into bi-focal glasses and my near and far sightedness was altered since the prior year's exam. Little did I know them, that she had nailed it on the head (so to speak). It would be over a year after that exam of being diagnosed of having an insult to the brain.
Other things pertaining to the eyes and vision occurred as well. My right eye drooped (almost closed) as if I had a stroke. Although that physical symptom has improved, that eye will still droop when I become extremely fatigued or exhausted. I also keep raccoon eyes now. I guess dark circles are apart of my life for now.
Other issues associated with my new syndrome is vertigo, coordination, visual perception, issues with peripheral vision and the eyes not working together- I believe this is called convergence insufficiency. My behavioral optometrists (which I also saw for the first time this year) stated that my vision now works like a "video camera". If you swing around too fast the watcher of the movie will become nauseous- and this is what has happened to me. My brain is not processing the visual images as it should. I have not started the vision rehabilitation at this point. I am still waiting on the government to do their part- but he has given me a 50/50 chance of improvement. At least now I can stay in stores longer without getting sick, although I will need a nap after shopping in most cases. I keep this as part of my therapy - for I try to do some type of shopping once a week or go and walk around in stores. Most people that know me also know that I hate to shop, but this too has been incorporated as a part of my rehabilitation.
So, for now I push myself to be on the computer and watch more TV. Reading is still an issue, because I had lost most of my ability to just "scan" what I read. So I read a lot slower now and have issues with retaining some if not most of information as well. So I have to re-read most of the literature in order to retain the information. I will save this issue (short term memory, working memory and retrieval of information) of course for another blog. But for now, I so miss how I use to see the world, although I am blessed that I still have my vision. So for now - It is what it is... but things could always be worse.
PTVS - is when a person will frequently report visual problems such as seeing objects appearing to move that are known to be stationary, seeing words in print run together, experiencing intermittent blurring, attempting to walk on a floor that appears tilted and having significant difficulties with balance and spatial orientation when in crowded moving environments. Besides fatigue, which can be brought on by PTVS, this syndrome has been a difficult one to overcome.
When I was first injured, I started having on and off symptoms of vertigo, which became more frequent as the days followed. Within three days of exposure, I was experiencing car and motion sickness- something that I have never had before. Within a week, I had a hard time driving, watching TV, looking at a computer screen or going into stores. I constantly had vertigo and felt as though I was always going down a dip in a big roller coaster. At times, some if not all of these things will still bother me during the day, although I am so thankful that it doesn't persist all day. I used to be a die hard fan of the TV series 24 - The series would start every January- in January of 2010, I could no longer watch TV. I had to miss other shows such as Fringe and American Idol due to flashing lights, the flicker of the TV screen itself and way too much movement. I had discovered in a doctor's office that trying to read a newspaper would put me into instant feeling of falling and nauseous.
I remember not too long after my injury I went to have an eye exam, thinking that maybe it was my actual eyesight. My prescription had change "quite a bit". I remember the person ordering the eye glasses asked me had I been in an accident or anything. I stated no but was exposed to some form of toxins. We talked and she stated that some people who acquire brain injuries will have their vision altered, and in some ways altered a great deal. My vision was altered quite a bit- I certainly went into bi-focal glasses and my near and far sightedness was altered since the prior year's exam. Little did I know them, that she had nailed it on the head (so to speak). It would be over a year after that exam of being diagnosed of having an insult to the brain.
Other things pertaining to the eyes and vision occurred as well. My right eye drooped (almost closed) as if I had a stroke. Although that physical symptom has improved, that eye will still droop when I become extremely fatigued or exhausted. I also keep raccoon eyes now. I guess dark circles are apart of my life for now.
Other issues associated with my new syndrome is vertigo, coordination, visual perception, issues with peripheral vision and the eyes not working together- I believe this is called convergence insufficiency. My behavioral optometrists (which I also saw for the first time this year) stated that my vision now works like a "video camera". If you swing around too fast the watcher of the movie will become nauseous- and this is what has happened to me. My brain is not processing the visual images as it should. I have not started the vision rehabilitation at this point. I am still waiting on the government to do their part- but he has given me a 50/50 chance of improvement. At least now I can stay in stores longer without getting sick, although I will need a nap after shopping in most cases. I keep this as part of my therapy - for I try to do some type of shopping once a week or go and walk around in stores. Most people that know me also know that I hate to shop, but this too has been incorporated as a part of my rehabilitation.
So, for now I push myself to be on the computer and watch more TV. Reading is still an issue, because I had lost most of my ability to just "scan" what I read. So I read a lot slower now and have issues with retaining some if not most of information as well. So I have to re-read most of the literature in order to retain the information. I will save this issue (short term memory, working memory and retrieval of information) of course for another blog. But for now, I so miss how I use to see the world, although I am blessed that I still have my vision. So for now - It is what it is... but things could always be worse.
Monday, December 5, 2011
Brain Injury and Exhaustion
Today I have been really "fatigued". I always say the words tired, fatigue and exhausted interchangeably, but I have decided to rate these feelings as I see them or literally as I "feel" since the brain injury. Being sleepy or tired - easiest to over come - a walk in the park. I can certainly push through these feelings to get things done. No nap required. Fatigue - more effort and energy to complete tasks. I have to pick and choose what I can accomplish in a given time frame or even day. If I do too much, then fatigue turns into exhaustion - a nap may certainly be required. Exhausted - "forget about it"... down for the count- lights out. A three hour nap minimum is required at "least" once a day perhaps more often. I am mostly down for a good part of the day, if not all day. I always "thought" I knew what exhaustion was prior to my brain injury- Ha - I didn't have a clue.
Before the injury, I was a very active person. Not active in the way of exercising, but always on the go or doing things like working, going to school and other activities, many activities. I didn't require even 6 hours of sleep to function. I was a night owl, not the greatest morning person though. When this injury first happened, during the first month or two- my energy level only got me into the shower- in fact I cut all but 4-5 inches of my hair off, because I was too weak and exhausted to even style it. Some mornings my husband would have to help me get in the shower and when I was so weak, he would sit in the restroom with me until I got out. He did this to make sure I wouldn't fall out of the shower, which almost happened on more than one occasion. Once showered, I would dry off, get dressed and go back to bed - some mornings I needed assistance again from my husband to even get dressed. Just that little bit of movement took everything out of me- it was pure hell. I can honestly say, I feel exhausted at some point everyday, but at least it's not all day like the beginning. I rarely get an opportunity to go through a whole day without exhaustion sneaking it's ugly head up at me. I would love to just "strangle" exhaustion - Make it go away-- but I can't do that right now. I am very grateful that at least I can now do some activities during the day and even drive longer distances.
The Guilt- of being fatigued, not being able to get tasks completed or spending more time with my family and friends. A simple phone call can sometimes exhaust me and I have to take a nap afterwards. I haven't told too many people about the phone call fatigue, but it happens. The brain is constantly working -so there are times when trying to follow a conversation and responding can be a challenge. There are times that I even "wing" it when my brain is in the "shut down" phase and I get lost in the conversation. There are times that I will just start rambling on the phone and that's when I know that it's time to hang up and go rest - now this is a "one to one conversation" when I get into a crowded area or more than one person is talking-- WHEW-- well it's a challenge to say the least.
I now notice other symptoms of where my body is telling me that "my brain has had enough". I will start to get vertigo and increased ringing in my ears. Sometimes the loud ringing starts then the vertigo. I can even have increased pain in my legs and arms. I don't know how or why these things are related, but I KNOW that they are. I experience them.... it's my life. I have a friend at the brain injury support group that has done research on partial seizures. She stated that the ringing of the ears and exhaustion afterwards are signs that I had a seizure (another blog but I now suffer from silent seizures and take daily meds for). Interesting, at least someone has stated what these symptoms may be related to- perhaps it's just exhaustion and/or perhaps it's the seizures either way- I know that I am not crazy!!!! Fatigued and exhausted YES-- NOT crazy. I will save CRAZY for another blog as well.... :-)
So when friends and family state that "you are always tired", yes I am. I don't want to be like this- who in there right mind would want to be (remember I am not CRAZY). So, I myself get very tired of saying that I am tired. People who don't have a brain injury won't get it. So don't think that you can. A person without a brain injury understands being exhausted for a short period of time and feeling "refreshed". I have lost that "feeling of refreshed" for now. Just please accept that for now that this is apart of me. I don't want to feel guilty that I am tired. It's my brain telling me that enough is enough. The brain doctor states that my brain is working "very inefficiently and literally shuts down". So I take it as a car running out of gas- it may or may not get you to your destination. The car can not run on fumes alone, and neither can I. Everyday it is a journey for me as well- the exhaustion for me is probably the biggest frustration that I have. So just bare with me-- I am still under reconstruction - I have to learn to set my limits, which is extremely hard for me. So please, don't state that "you are tired again?" I am tired, fatigue and exhausted all day, everyday it's just a matter to what degree I am at. So just hang on and bare with me. In fact, I think I would perfer that people don't ask me how I am feeling - tired is always the first thing that I will say.
BUT never lose sight of this - I AM A REDHEAD-- I AM FEISTY AND I WILL BE UP AND RUNNING AGAIN. HUGS....
Before the injury, I was a very active person. Not active in the way of exercising, but always on the go or doing things like working, going to school and other activities, many activities. I didn't require even 6 hours of sleep to function. I was a night owl, not the greatest morning person though. When this injury first happened, during the first month or two- my energy level only got me into the shower- in fact I cut all but 4-5 inches of my hair off, because I was too weak and exhausted to even style it. Some mornings my husband would have to help me get in the shower and when I was so weak, he would sit in the restroom with me until I got out. He did this to make sure I wouldn't fall out of the shower, which almost happened on more than one occasion. Once showered, I would dry off, get dressed and go back to bed - some mornings I needed assistance again from my husband to even get dressed. Just that little bit of movement took everything out of me- it was pure hell. I can honestly say, I feel exhausted at some point everyday, but at least it's not all day like the beginning. I rarely get an opportunity to go through a whole day without exhaustion sneaking it's ugly head up at me. I would love to just "strangle" exhaustion - Make it go away-- but I can't do that right now. I am very grateful that at least I can now do some activities during the day and even drive longer distances.
The Guilt- of being fatigued, not being able to get tasks completed or spending more time with my family and friends. A simple phone call can sometimes exhaust me and I have to take a nap afterwards. I haven't told too many people about the phone call fatigue, but it happens. The brain is constantly working -so there are times when trying to follow a conversation and responding can be a challenge. There are times that I even "wing" it when my brain is in the "shut down" phase and I get lost in the conversation. There are times that I will just start rambling on the phone and that's when I know that it's time to hang up and go rest - now this is a "one to one conversation" when I get into a crowded area or more than one person is talking-- WHEW-- well it's a challenge to say the least.
I now notice other symptoms of where my body is telling me that "my brain has had enough". I will start to get vertigo and increased ringing in my ears. Sometimes the loud ringing starts then the vertigo. I can even have increased pain in my legs and arms. I don't know how or why these things are related, but I KNOW that they are. I experience them.... it's my life. I have a friend at the brain injury support group that has done research on partial seizures. She stated that the ringing of the ears and exhaustion afterwards are signs that I had a seizure (another blog but I now suffer from silent seizures and take daily meds for). Interesting, at least someone has stated what these symptoms may be related to- perhaps it's just exhaustion and/or perhaps it's the seizures either way- I know that I am not crazy!!!! Fatigued and exhausted YES-- NOT crazy. I will save CRAZY for another blog as well.... :-)
So when friends and family state that "you are always tired", yes I am. I don't want to be like this- who in there right mind would want to be (remember I am not CRAZY). So, I myself get very tired of saying that I am tired. People who don't have a brain injury won't get it. So don't think that you can. A person without a brain injury understands being exhausted for a short period of time and feeling "refreshed". I have lost that "feeling of refreshed" for now. Just please accept that for now that this is apart of me. I don't want to feel guilty that I am tired. It's my brain telling me that enough is enough. The brain doctor states that my brain is working "very inefficiently and literally shuts down". So I take it as a car running out of gas- it may or may not get you to your destination. The car can not run on fumes alone, and neither can I. Everyday it is a journey for me as well- the exhaustion for me is probably the biggest frustration that I have. So just bare with me-- I am still under reconstruction - I have to learn to set my limits, which is extremely hard for me. So please, don't state that "you are tired again?" I am tired, fatigue and exhausted all day, everyday it's just a matter to what degree I am at. So just hang on and bare with me. In fact, I think I would perfer that people don't ask me how I am feeling - tired is always the first thing that I will say.
BUT never lose sight of this - I AM A REDHEAD-- I AM FEISTY AND I WILL BE UP AND RUNNING AGAIN. HUGS....
Sunday, December 4, 2011
Accomplishing Tasks
Well, Yesterday and today I was focusing on "getting my nest in order". I started making room for some furniture that my friend's parents gave me. A nice couch and chairs. Now, I have to admit I laughed at myself soooo many times trying to figure out where I was going to put everything. I personally wanted to throw out the old couch - but hubby said no. Dang pack rat that he is. Anyway, you would have thought I was trying to build something huge. As I was trying to figure this all out- everytime I would move the furniture around I would wash the baseboards etc. It felt so good to be getting some of this cleaning done.
Here's the problem - too many tasks on my plate. Since the injury, I can not stay focused on one thing. I don't mean to jump around and I certainly was not like this before. It's as if I can't complete anything I start. It's not bordom on what I am doing- it's as if I forget what I was doing when something distracts me. I have already gotten distracted twice since starting this post. It drives me CRAZY. I will be doing one thing and before I know it I am in the middle of something totally different. I started the laundry today, worked some in the office and ended up in the back yard cutting grass and raking leaves. Neither my laundry, office, the cleaning from yesterday or the yard work is completely finished. It is so hard to explain all of this when these actions are so different from how I use to be. Lord, I just got very distracted again. You know, it does take some time for me to even write these blogs. :-) Thank God I have this screen open on my computer-- I may have totally forgot that I was blogging....ha,ha,ha
Somehow this problem with attention deficeit and time combined are an issue as well. You see, I have also lost the concept of time. I won't go into that one too much, I will save that for another blog- but I can't tell how much time has passed - so time management is OUT the window for me now. My doctor wants me to download a timer on my computer and when I hear the timer go off- I need to figure out if I am the right course for the task at hand. She said that the easiest way to track this would be for me to put a penny in my pocket everytime I was off course. LOL I will have a pocket full of pennies....LOL I guess I now have to learn how to break up the tasks into smaller tasks to get anything complete. WOW - tasks into tasks and so on.... Oh well-- I guess I have to re-learn how to crawl before I can run.... and one day I will be running again.
Here's the problem - too many tasks on my plate. Since the injury, I can not stay focused on one thing. I don't mean to jump around and I certainly was not like this before. It's as if I can't complete anything I start. It's not bordom on what I am doing- it's as if I forget what I was doing when something distracts me. I have already gotten distracted twice since starting this post. It drives me CRAZY. I will be doing one thing and before I know it I am in the middle of something totally different. I started the laundry today, worked some in the office and ended up in the back yard cutting grass and raking leaves. Neither my laundry, office, the cleaning from yesterday or the yard work is completely finished. It is so hard to explain all of this when these actions are so different from how I use to be. Lord, I just got very distracted again. You know, it does take some time for me to even write these blogs. :-) Thank God I have this screen open on my computer-- I may have totally forgot that I was blogging....ha,ha,ha
Somehow this problem with attention deficeit and time combined are an issue as well. You see, I have also lost the concept of time. I won't go into that one too much, I will save that for another blog- but I can't tell how much time has passed - so time management is OUT the window for me now. My doctor wants me to download a timer on my computer and when I hear the timer go off- I need to figure out if I am the right course for the task at hand. She said that the easiest way to track this would be for me to put a penny in my pocket everytime I was off course. LOL I will have a pocket full of pennies....LOL I guess I now have to learn how to break up the tasks into smaller tasks to get anything complete. WOW - tasks into tasks and so on.... Oh well-- I guess I have to re-learn how to crawl before I can run.... and one day I will be running again.
Friday, December 2, 2011
Sisterly Love and Requesting a Change.
Well, today is Friday and it has been a really good day. I started off my day by taking my older sister to the airport. She is going to Japan to work for 2 1/2 weeks. I am envious, yet so proud of her for working so darn hard. Although, I do worry about her often when she is out of town. I guess I can honestly say that I worry about both of my sisters- but not as much now as I did prior to the injury. I had to loosen the "momma bear" control on both of them. This control was self induce- I had always played the role of protector etc, but since the injury I had become too weak and fatigued to carry out that role. I was so afraid at first to let go, but knew that I could not protect them as I had done once before. Apart of me, in the beginning of this transition, felt as though I would not be as important or needed by either once I couldn't fulfill this duty - here again all of these feelings were self imposed. They had never asked me to take on this role nor did they ever imply that I would be less important to them if I gave up this control. After my injury, both of my sisters graciously let me relinquish this role and I know that they still love me just as much now, if not more. I thank them very much, for giving me the strength to see that. I can now focus my energy more so on my life and health, which is the way they want it anyway. For they have become my protector at times over the past 2 years. Oh how I love them both so much. Ha, I think both of them were finally relieved that mama is leaving them alone... LOL especially my baby sister.
Today started out fun- I won a pizza from Papa Johns. One of a million that Papa is giving away. Well, I said to myself - I am feeling lucky - I will play the lottery- I should have just stopped at the pizza. Not so lucky on that scratch off ticket, so now my luck is 50 - 50. How will the Mega Lottery play out tonight. Yes I know- that's probably why I won't even check it for weeks to come- BUT you can't win if you don't play. :-)
I also received another phone call from John today. He is fighting so hard for my request to help change the safety manual in order to protect all field agents in the future. As he put it today, "I think I am going to make a few people really mad at me - but this has to get done". I think he is right about getting people really upset - but this isn't about how things were done or NOT done with my injury - it's about correcting the weaknesses that occurred so this doesn't happen again. You would think that people would get that. I am not here to point blame- what's done is done - I want to be excited that things get corrected and that all of my fellow co-workers are fully protected while in the field, the government can show just cause and recoup the expenses from a third party injury and taxpayers won't have to keep footing the bill when it is "others" who are responsible. It's NOT a me thing - it's a WE thing -
If we don't make mistakes -then how do we learn? I we don't learn then how can we grow? Learn from this and grow..... which also includes myself.
On another note-- Thank goodness for spell check....LOL oh well- this is me!!!!
Today started out fun- I won a pizza from Papa Johns. One of a million that Papa is giving away. Well, I said to myself - I am feeling lucky - I will play the lottery- I should have just stopped at the pizza. Not so lucky on that scratch off ticket, so now my luck is 50 - 50. How will the Mega Lottery play out tonight. Yes I know- that's probably why I won't even check it for weeks to come- BUT you can't win if you don't play. :-)
I also received another phone call from John today. He is fighting so hard for my request to help change the safety manual in order to protect all field agents in the future. As he put it today, "I think I am going to make a few people really mad at me - but this has to get done". I think he is right about getting people really upset - but this isn't about how things were done or NOT done with my injury - it's about correcting the weaknesses that occurred so this doesn't happen again. You would think that people would get that. I am not here to point blame- what's done is done - I want to be excited that things get corrected and that all of my fellow co-workers are fully protected while in the field, the government can show just cause and recoup the expenses from a third party injury and taxpayers won't have to keep footing the bill when it is "others" who are responsible. It's NOT a me thing - it's a WE thing -
If we don't make mistakes -then how do we learn? I we don't learn then how can we grow? Learn from this and grow..... which also includes myself.
On another note-- Thank goodness for spell check....LOL oh well- this is me!!!!
Thursday, December 1, 2011
Emotional Wednesday
I knew the night before, that Wednesday, Nov 30th, was going to be an extremely emotional day. In fact, when asked about this day prior, I would just shrug my shoulders and say- no worries, I got this. I meet with one of my guardian angels, John, early in the morning at the Federal Building where I work as a revenue agent. John is a Union Steward, who has been representing me since the summer. We were scheduled to have a conference call with the Area Director and Labor Relations that were pertaining to issues other than my injury.
I have to admit- 4 hours before this phone call I had already started crying. You see, John started looking up the means to get other Government agencies on board due to my exposure to toxins- this was a safety issue not related to the conference call, although, some events are tied to my injury. Now that I have proof that there was an exposure, more government agencies may come on board- the problem is that it's just one person sick (that we know of) and it has been over 2 years since the injury. I remember feeling very fatigued and like I was having my episodes of silent seizures, or whatever it is that I go through. Just hold on Barb- I kept telling myself-- just hold on.
John was reading the research information outloud - "WOW - the EPA should have been involved and with an injury like yours- they are incharge of pesticides etc. perhaps we can still submit a formal complaint." He kept talking but all I could feel was a sense of hurt come over me and these big crocodile tears just started forming and streaming down my face. OH MY, NOT NOW BARB, NOT NOW, Don't you freakin start crying now - Wait until you are alone so no one sees this part of you. John must have looked up because he stopped reading and there was just silence in the room. I looked up at him and stated "why couldn't someone just do their job..that's all I wanted, was for someone to do their job. To help protect me. I begged for OSHA or someone to go to that audit site and inspect. To find out what I had been exposed to. My co-workers had requested the same thing. Nothing...Nothing. I bet if it had been the individuals that I requested help from that got sick at that audit site... they would have received help and assistance-- why wasn't my life important?" I got up from the chair at this point and stated that I needed to get some air- to defrag my brain. I looked at John and said- "and don't think for one minute that these tears are tears of weakness." He smiled and told me that he knew without of doubt that it was not weakness but courage. I had to leave the conference room after that.
This was the first time since the injury that I had asked this question to another person "why wasn't my life important enough for someone to take action." I was devastated at this point yesterday. I can not understand how other human beings could/did so blindly ignore what had happened to me. Now this question is not the same as why did this happen to me? but the why didn't these people get off their ass and do their jobs?
Needless to say, during that phone call I got extremely emotional again. I didn't cry, but the hurt was there- you could hear it in my voice and I didn't hold back my emotions pertaining to how I have been treated outside of this injury and pertaining to my injury. This was my moment to tell my side of the story and I did just that... and well- I guess you could say I also gave advice on how to run the whole division etc. I don't remember being rude about it-- just emotional. During this conference call - which was on speaker phone, John discribed watching me have quit a few "nervous jerking or tics" that he has never seen from me before. I guess my emotions did get the best of me-- but this was my right.... this was my story and my life.
I hardly remember telling the Director that I wanted a formal written apology for all of the allegations and slander that was stated in a written medical letter, that had been mailed to my brain injury specialist from the IRS- workman's compensation division. We held this information till last, to let the Director have a full understanding of how I had been treated. By the way, I was never suppose to have seen that letter. The letter that my employer mailed to my doctor without cc me. It was a good friend that was with me that day at Dr. O'Shanick's office and just happened to ask my doctor if he had any correspondences from the IRS or DOL (Department of Labor). My doctor was so upset about this letter. "A crock of shit" is what he called it.... although I had many other choice words after I read the letter myself. So I took the pleasure in reading a paragraph, to the Director, that was slanderous accusations about me. He was silent- silent in what appeared to be disbeleif that this was even written. For I truly feel that he had no prior knowledge. One thing about me-- I don't cry wolf....if anything I down play situations... just like I down played the seriousness of my injury and my true feelings of constantly being retaliated against. I am not crying wolf now-- but taking up for me and taking a stand- I will not be treated like this anymore. In fact- I remember even telling them that. :-)
We all ended the meeting on a good note and with a ray of hope that things will perhaps be corrected.... the wrongs righted- but we shall see. As I was leaving the conference room to go home, John stated "Just stick with it Barb...Just stick with it don't give up now" I looked at him and smiled...John I am here and I am NOT going anywhere. I will fight for what is the truth and to also help protect others. My hopes are that no one will ever have to go through what I have been through over the past 2 years.
So, when John called me today to check up on me and to offer more encouraging news about a potential inspection of the site.... I asked him did I "really" tell the Director that I wanted a written formal apology? John laughed out loud and said "Oh yes you did...You did GREAT yesterday Barb, You did GREAT." My eyes got really big-- Darn those seizure moments...I kinda remember asking...but wasn't quite sure- or here again, wanted to be in denial that I actually spoke my mind and took up for myself. LOL Oh well... as I sit here typing with a smile on my face, I am very proud of myself for being so strong and for standing up against those who are wrong and untruthful. You go Barb... You go....
I have to admit- 4 hours before this phone call I had already started crying. You see, John started looking up the means to get other Government agencies on board due to my exposure to toxins- this was a safety issue not related to the conference call, although, some events are tied to my injury. Now that I have proof that there was an exposure, more government agencies may come on board- the problem is that it's just one person sick (that we know of) and it has been over 2 years since the injury. I remember feeling very fatigued and like I was having my episodes of silent seizures, or whatever it is that I go through. Just hold on Barb- I kept telling myself-- just hold on.
John was reading the research information outloud - "WOW - the EPA should have been involved and with an injury like yours- they are incharge of pesticides etc. perhaps we can still submit a formal complaint." He kept talking but all I could feel was a sense of hurt come over me and these big crocodile tears just started forming and streaming down my face. OH MY, NOT NOW BARB, NOT NOW, Don't you freakin start crying now - Wait until you are alone so no one sees this part of you. John must have looked up because he stopped reading and there was just silence in the room. I looked up at him and stated "why couldn't someone just do their job..that's all I wanted, was for someone to do their job. To help protect me. I begged for OSHA or someone to go to that audit site and inspect. To find out what I had been exposed to. My co-workers had requested the same thing. Nothing...Nothing. I bet if it had been the individuals that I requested help from that got sick at that audit site... they would have received help and assistance-- why wasn't my life important?" I got up from the chair at this point and stated that I needed to get some air- to defrag my brain. I looked at John and said- "and don't think for one minute that these tears are tears of weakness." He smiled and told me that he knew without of doubt that it was not weakness but courage. I had to leave the conference room after that.
This was the first time since the injury that I had asked this question to another person "why wasn't my life important enough for someone to take action." I was devastated at this point yesterday. I can not understand how other human beings could/did so blindly ignore what had happened to me. Now this question is not the same as why did this happen to me? but the why didn't these people get off their ass and do their jobs?
Needless to say, during that phone call I got extremely emotional again. I didn't cry, but the hurt was there- you could hear it in my voice and I didn't hold back my emotions pertaining to how I have been treated outside of this injury and pertaining to my injury. This was my moment to tell my side of the story and I did just that... and well- I guess you could say I also gave advice on how to run the whole division etc. I don't remember being rude about it-- just emotional. During this conference call - which was on speaker phone, John discribed watching me have quit a few "nervous jerking or tics" that he has never seen from me before. I guess my emotions did get the best of me-- but this was my right.... this was my story and my life.
I hardly remember telling the Director that I wanted a formal written apology for all of the allegations and slander that was stated in a written medical letter, that had been mailed to my brain injury specialist from the IRS- workman's compensation division. We held this information till last, to let the Director have a full understanding of how I had been treated. By the way, I was never suppose to have seen that letter. The letter that my employer mailed to my doctor without cc me. It was a good friend that was with me that day at Dr. O'Shanick's office and just happened to ask my doctor if he had any correspondences from the IRS or DOL (Department of Labor). My doctor was so upset about this letter. "A crock of shit" is what he called it.... although I had many other choice words after I read the letter myself. So I took the pleasure in reading a paragraph, to the Director, that was slanderous accusations about me. He was silent- silent in what appeared to be disbeleif that this was even written. For I truly feel that he had no prior knowledge. One thing about me-- I don't cry wolf....if anything I down play situations... just like I down played the seriousness of my injury and my true feelings of constantly being retaliated against. I am not crying wolf now-- but taking up for me and taking a stand- I will not be treated like this anymore. In fact- I remember even telling them that. :-)
We all ended the meeting on a good note and with a ray of hope that things will perhaps be corrected.... the wrongs righted- but we shall see. As I was leaving the conference room to go home, John stated "Just stick with it Barb...Just stick with it don't give up now" I looked at him and smiled...John I am here and I am NOT going anywhere. I will fight for what is the truth and to also help protect others. My hopes are that no one will ever have to go through what I have been through over the past 2 years.
So, when John called me today to check up on me and to offer more encouraging news about a potential inspection of the site.... I asked him did I "really" tell the Director that I wanted a written formal apology? John laughed out loud and said "Oh yes you did...You did GREAT yesterday Barb, You did GREAT." My eyes got really big-- Darn those seizure moments...I kinda remember asking...but wasn't quite sure- or here again, wanted to be in denial that I actually spoke my mind and took up for myself. LOL Oh well... as I sit here typing with a smile on my face, I am very proud of myself for being so strong and for standing up against those who are wrong and untruthful. You go Barb... You go....
Starting my "blog"
Today I started my blog. But of course, this is what the title is called. I am doing this to increase brain injury awareness and for my own rehabilitation. I struggle on a daily basis with word and sentence structure. This is most prominent when I am fatigued or going through the "brain shut down" phase. The shut down phase can happen frequently throughout the day- it mostly depends on sleep factors, stress, visual and audio stimulus just to name a few.
Other symptoms associated with my brain injury are - short term memory loss, retrieval of information, vertigo, tinnitus (ringing in the ears), extreme fatigue, deficiencies in executive function and other things that I can't remember at this moment- it's a retrieval thing- :-)
I had a very emotional day - so this too, has also prompted me to start a blog as a way of communicating my experiences and emotions as I go through this "journey" of my brain injury survival. I will add this- the individuals that I have met along the way with brain injuries are extremely brave and strong- and I want to thank those that share their life's experiences with me and this blog. My favorite quote is "If you aim at nothing, you will get nothing". Well, my goals include identifying my deficencies and compensate for them. I will never be the person I once was, but I plan on having a higher level of functioning in the future- so may this journey begin.
Other symptoms associated with my brain injury are - short term memory loss, retrieval of information, vertigo, tinnitus (ringing in the ears), extreme fatigue, deficiencies in executive function and other things that I can't remember at this moment- it's a retrieval thing- :-)
I had a very emotional day - so this too, has also prompted me to start a blog as a way of communicating my experiences and emotions as I go through this "journey" of my brain injury survival. I will add this- the individuals that I have met along the way with brain injuries are extremely brave and strong- and I want to thank those that share their life's experiences with me and this blog. My favorite quote is "If you aim at nothing, you will get nothing". Well, my goals include identifying my deficencies and compensate for them. I will never be the person I once was, but I plan on having a higher level of functioning in the future- so may this journey begin.
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